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Leves of Remicade. Change to 10mg/4weeks

H

Hera

Hello,
I have crohn's colitis being treated with infliximab 5MG/4 weeks, aza and pentasa. But I am going to change to 10MG, because the dose of 5 has already stopped working for me.

My levels now are about 13. They were about 15 when it worked for me.

What are your levels usually being in remission? Do you think that increasing the medication could help in my case?
 
Jo-mom

Jo-mom

Location
Toronto, Canada
Hello, levels of 13 are good for infliximab. Usually anything over 4 is considered good. My son's GI likes to see about 7 to 10. If you are already at 13 and it isn't working, I'm not sure an increase will make a difference. What does your doctor say? Previously, my son's levels were at near zero and doubling the dose from 5 to 10mg made a huge difference for him.
 
H

Hera

My doctor is in favor of switching to another drug, but I asked him to try the last chance.

The change scares me because if I change infliximab will no longer be among the possible options. (I only used it for 10 months). After all, each body is different. Maybe I need more levels than other people.. Actually, I would not like living with the doubt of not trying at maximum doses, but perhaps it will all be a waste of time
 
Scipio

Scipio

Well-known member
Location
San Diego
If 13 already isn't working then it feels like doubling the dose is a bit of a long shot. But IMO it's still worth trying to see if Remicade effectiveness can be retrieved for you. Sometimes if you give a big enough dose the drug can overpower the anti-drug antibodies that are causing the loss of response.

You want to hang on to your first biologic as long as possible, because the follow-on biologics often do not work as well as the first one did.
 
H

Hera

Yes. I think it's worth a try and not living with the doubt. Who determines what level each one needs? they really don't know. My ulcers are deep and probably difficult to heal, I currently weigh 39 kilos at the age of 36. So not very standard. I will write here about how it went.
 
H

Hera

updating:

By the moment I'm still on 5mg/4 weeks. calpro: 600. The plan is start to 10mg/4weeks on december.

But i' ve just check my infliximab levels and they have changed a lot in the last measurement.
they have gone from 13 to >20 in just 2 months. Usually my levels were close to 13. Actually I don't understand any of this.. Do you lived something similar?

With this increase, I doubt they are determined to go to 10mg/4 weeks. which was gaving me a little hope.
 
H

Hera

yes, I have daily abdominal pain and bleeding. I've been having these symptoms for a year and a half. I only felt well for short periods when adding predisone. It's maddening. If everything continues like this, I think I'll be a candidate for surgery, and the idea terrifies me.
 
Scipio

Scipio

Well-known member
Location
San Diego
It's becoming increasingly clear that infliximab is not working for you. But don't give up hope. Just because one biologic doesn't work doesn't mean they all won't. The biologic weapon still has several more bullets to fire at the Crohn's.

If your doc switches biologics they should first try you on another anti-TNF biologic such as Humira. And if that doesn't work they can then switch to a different class of biologics such as Stelara, Skyrizi, or Entyvio, all of which work by completely different mechanisms than infliximab.
 
H

Hera

Doctor thinks it would be best to switch directly to Stelara. He hasn't talked about trying another anti-Tnf. My Crohn's is only in the colon. As far as I read Steleara works best in the small intestine, so I was surprised by that choice.
If I go to Steleara, could I go afterwards with Humira for example?
 
Scipio

Scipio

Well-known member
Location
San Diego
Hera said:
If I go to Steleara, could I go afterwards with Humira for example?
Click to expand...
You could. It would be unusual to go back to anti-TNFs after switching out of that class of drugs but certainly not unheard of. I'm on Stelara myself and it works very well for me (ileal Crohn's). I'm also slightly surprised that your doc wouldn't try Entyvio first for Crohn's confined to the large bowel, but maybe your GI has been having good results with Stelara and wants to stick with that.
 
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